Hep C Discussion Forum

Thankyou all for your comments! I feel a lot more informed sometimes docs just don't make sense lol 

And the graph put it all into perspective such a good feeling to know we near tackling it, all that was said about treatment was 12 week oral anti viral?? So not too sure which they want him to get a bit healthier as he is overweight and a type 2 diabetic which isn't controlled very well at the moment but even so treatment should be pretty soon, il let you all know my results when I get then tomorrow 

Much love and thanks to you all 

J and P

Interestingly, G3 and 2 were considered to be easiest to treat due to their softer shell covering surrounding the virus. However, that was with Interferon and Riba. They found it was harder to treat G3 with DDA's, which is a lot healthier and better. At the end of the day, they can all do some damage untreated, or not in some people. But 2 responded fantastic to DDA's. Yay for medications! :D

Hi Jane,

so glad to hear you and your husband are both fpigging this disease before it had time to do real damage. I am, ohhhh, was, a GT 2 as well. They say it's the easiest one to treat but believe me, it does the same amount of damage left untreated. 

You can look at a world map showing where different genome types are most common. I'm from Australia and from memory it's an uncommon one here as well as in the US. I think in parts  of Europe and Africa it's more prevalent. I suppose in these days of global travel it means less and less. 

The lucky thing for us is that most research was done on GT1 because it's most prevalent in the US and on GT 3 because it's one of the harder ones to treat. We were able to benefit from what seem to be drugs which are effective across GT types. 

Please correct me moderators if I'm wrong in any of this. 

Syd

Also phils fibroscan was 3 aswel does anyone know how good/bad this is? 

Many thanks 

I HAD gt2 as well.  Now I'm don't.  Simple as that.

Hi again, Jane!

Very best of luck for Thursday!  There`s a very good chance that you`ll test negative but if it turns out that you`re infected then please don`t worry.  You both know a lot more about Hep C than when you first joined us and you`re getting through all the tests and procedures, step by step. 

I was so pleased to read that your children are clear, and I know from my own experience just what a relief that must have been!

Genotype 2 is a little less common than gen 1 or 3, but nowadays just as curable, so you have no cause to worry about that. 

Keep us posted as soon as you have some news! 

Hi Jane, really good news about your children!  GT-2 is the weakest dragon out there! With the new DAA's there using for treatment, Phil will do very well, most likely over a 8 week treatment course.   Now is the best time to treat- so go after it hard!  RC

Great news, collective sigh of relief. 

Keep us posted on yours and Phil's tests. Praying for you all. 

Thanks for the update on the kids. That's such a relief! I know you were concerned and even though the chances were slim, it's still a blessing when you find out for sure. No more worries on that anymore. 

Sounds like you've been busy. Nothing wrong with that. It's a busy time with everything being done at the same time. Be pleased things are progressing positively and keep checking off that list. It won't be long and you'll have everything accomplished. Then it'll be time to start dancing! Keep us informed.

Take care and say hi to the family 

Thankyou as much as i vowed I wouldn't be in the room that Phil would have to have that particular joy I just couldn't do it,  I had to be there for them and try give them some mummy love,  they watched me have mine to prepare them but still soo hard bless them,  well we're off camping for a couple of nights on Thursday so hopefully will take their minds off it. 

J and P 

Y'all did the right thing looking out after the little ones. That can really be hard sometimes. I remember when my daughter was born. She had a bottom tooth at birth and it had to be removed. Guess who got to hold her through the procedure?

Man my heart still aches thinking about it and that was better than 30 years ago.

Peace of Mind is headed your way. Hang in there !

JimmyK

Hi Jane,

I'm happy to hear your dentist treated you as I expected him to, respectfully. Our medical and dental providers are generally on top of these issues and are prepared to deal with them correctly. We have a choice when dealing with those that don't. 

I hope you're feeling a bit better today. The flu is just miserable. Good luck with the continuing dental work next week. That kind of work is rarely enjoyable, but oh so good when it's finished! Isn't the term "good dentist" an oxymoron? I believe it might be!

Take care and say hi to Phil  

Get over the infection, cold, flu thing and then you will feel better mentally and physically and then deal with the dental tasks. You have been burning the candle at both ends my dear!

It is very important to inform all the caregivers we have of our health items, meds etc. It can affect the Rx we get, the treatment...very important. Plays into what they can give us, cannot do and so on. We always read about docs that pass on diseases by unsterile instruments/unsafe practices (sad to say) and get sued, this would be similar to that. Our health information is protected due to HIPAA.  For me it was a joy to tell, them my HCV was cured and being that most have known me for years they were genuinely happy for me. My dermatologist hugged me! 

So get some rest then get that tooth taken care of. 

Thankyou all im trying to rest etc and I'm really lucky I've got great kids and in laws who've been looking after me while Phils been working,  I've put the dentist off and yesterday part of one of my teeth chipped typical! Could so do without that right now lol so am dosing myself up and hoping to get there pk, fingers crossed. Thankyou all for your advice and wisdom is much appreciated 

J and p

Jane,

I agree, give the dentist a pass until you're over your flu and chest infection. If it's something serious, that's one thing, but if you can wait, do it.

The thing with Doctors and Dentists, they appreciate knowing all of your health information. They all go through a lot of education and training to deal with their patients health issues. Don't for a second think you're going to be the first patient they've treated with HCV. It's more common than you know and if you read up on those infected, the claim, while wide in scope, says that between 5-50% of the people infected actually know they have it. So those that do, are doing the correct thing by letting their doctors know they are HCV positive. Just ask them to let you update your health record. They are prepared and understand. That's all you need to do.

Heyy think I've just been coping by burying my head in the sand a bit though I know that's not the answer :( 

Been poorly past few days flu type bug and chest infection and I've got the dentist tomorrow which I'm dreading as how do you come out with something like this?? 

J

Hi Phil, Hi Jane,

Just some thoughts and my take on informing others of my HCV.

I chose not to tell anyone other than my immediate family. I just figure it's personal business and that in my case there has been no added gain to telling others about it. There's no un-telling people and why bother unless it will help in some way.

In the scheme of things this treatment will occupy a very short period in your lives and soon you will have reached SVR.

There's still a lot of stigma out there, at least where I live, I just didn't choose to give others a reason to view me differently than they would otherwise. People rarely react to news just as you might predict, this could potentially cause problems at work IMO (unless you have a very special, close (not usually the case)  rapport with everyone there).

Just a point of view to ponder as you move ahead.

What's important is to move ahead with treatment and before you know it you'll be SVR and moving on with life.

Be Well,

Linux

Hi Jane,

I am one of the people that is open with my diagnoses. The way I look at it, I did nothing wrong to get it, I am not ashamed I have it, and I've been able to answer questions, assumptions and people have even said they've never been tested for hep, or even had the simple Hep A and B injections but would now consider it. One of the things I've been able to rectify, is the confusion between Hep C and B. People assume they are the same virus when in fact Hep C is nearer in pathology to the River Nile virus. As my husband is negative after all these years people also understand that its not like its going to jump out of my body into theirs. I have encountered lots of questions, about how I became infected, how I knew etc. I simply 100% do not know. But that is not here nor there. A few have asked if I have done drugs and it doesn't insult me at all, because it is human nature to make assumptions. As it is a curable disease, people haven't freaked out, I've never met anymore that has shunned me or been frightened by it, but most people these days read the news and understand its not the worst disease on the planet. I think its OK for people to do what they think is right for them. If you want to talk about it do, if not, its your decision. Stigma is based on lack of information and knowledge. When H.I.V first came out, I was afraid of it and anyone infected. Knowledge goes a long way in making you realize how silly my original thoughts were and its nothing to be afraid off. The one thing that shocks people the most is I am fit and healthy. I explain my liver is probably in better shape than their because I eat well, train, don't drink and glow with health. I wish you all the best with the next stages. Before you know it you'll be saying you HAD Hep C. x

Greetings,

I have told this story before here but will do so again as it is fitting.

My sister, was literally one of the poster children for Polio. My Mom, long after the fact told me about going out to the Helms Bakery Truck where she was used to gathering, in the neighborhood, with the other ladies.

It was generally a time for idle chit chat and smiles. Maybe an exchange of a recipe or some other tip.

Once the ladies had heard about my sister, they noticeably pulled back one morning. My Mom forever carried that moment and that moment was created in ignorance.

Your friends and others will in no way be up on Hep C. They will simply maybe at best be able to think of a Harvoni commercial but know nothing else. It is not their fault but the fact is they will for the most part be ignorant of the condition, how it is contracted, and what to do once it is. That will spark fear and needless fear at that.

Before I really began to study, all I really knew is, I have it, my wife has it, her brother died from it, and my best riding brother also died of it. Not a lot of information to draw a pretty picture from.

In this day, a realistic picture is not all that bad, but you have to be informed to see that and it should never be expected that your friends and others will be informed. Not at this stage in time with regard to Hep C.

We are here, and we will hear when questions and concerns arise and for now, keep your friends on the basis of how you became friends and in my opinion it is best not to test them in matters they are not informed in.

Fear is a powerful thing I see others suffer from. If I were to go into a battle with them, I would surely exploit it. But if they are simply people I care for, then I would shield them from the need to suffer from it unless their safety was truly in jeopardy by my so doing.

Your Brother

JimmyK

Jane,

This is indeed a very personal decision.  I trust you will know what is best for you.  You asked what others have done so I will tell that I chose to take the private route for many reasons. 

The first was that I had enough to deal without having to deal with everybody else's reactions.

The second reason is that I didn't want my deeply personal experience to become fodder for social drama (in a less trusted group).  

Third, I didn't want to share with people who would make quick assumptions about how I may have gotten the virus. 

Fourth would be the stigma, but really I didn't care too much about that, nor do I want to honor it.  I'm usually willing to communicate information and strong enough to set the record straight, but while I was in shock, and while I was on treatment, I was less patient and more volatile. I had no tolerance for misinformation. I knew this was mostly due to fear, stress, and side effects and decided to wait it out.  It was not a good time to represent myself or explain  the virus. I pulled way back socially and I'm glad I did.  My closer and kindest friends were enough.

Moreover, I found the very best allies were the people on this particular forum.  How about that - people I've never even seen.  But without them, I wouldn't have even known about side effects.  I would have missed tons of information, distinctions, and kindness.  It was a lonely feeling that nobody around me could understand what I was going through. I didn't really want them to get it, in a way.  I wanted them to feel way better than I did.

Since treatment, I don't talk about it it lot.  I'm not a virus.  I'm on to other things, like health and happiness, buy I feel no shame about having contacted a HCV.  I speak up when I can be heard.  I'm even proud of the strength I have learned and I vow to help clear the fog around the topic any time I can.  I vow to help others lovingly any time I can.

I'm not sure this fits for you but you can add it to your considerations. You'll be surprised at how much you can do.

Warmest wishes,

Cheddy

Jane,

That's what we're here for. Please feel free to talk to us anytime you feel like it. We understand exactly or as close as most individuals can. Since the laws in the UK are different than here, maybe one of our UK members, Jill or Pablo will mention if there are any employee protections regarding time off. Here in the US, we have a Family Medical Leave Act that provides us time off for such things, as well as job protections for medical treatment and disabilities. Finally, if you don't feel like explaining things to others, you don't have to...

Hi Jane,

That's a personal decision that only you can make. We all have different circumstances at home and work. What worked for me, may not work for you. Some people don't care what others might think in a situation like this, but others choose to keep such things private. If you have open, understanding and non judgemental people surrounding you at home and at work, people you can trust with your personal information, you may feel comfortable sharing your situation with them. Some people aren't as educated and receptive as others. Only you know those around you and how they may feel. 

We all continue to advocate for education and treatment, but it's important that we also do what we can to reduce the stigma that continues to surround the disease. The only way we can do that is to make sure people are provided with accurate information about it. There are resources available that can help explain and educate others. We have a lot of good information here on the forum in the Knowledge Base section: HERE  If you need some help tracking down additional information, don't hesitate to ask.

We have discussed this many times here on the forum and people have differing opinions on this. I'm sure you'll hear from a few others with their thoughts on this as well. 

Hi Jane, 

i have only just read your posts and am sorry that You have come back positive too.However it has been a privilege watching Jimmy and his wife being treated one after the other and drawing strength from each other. It's great you've  got it before it's done too much damage - and Phil situation will really be only become clear after the fibroscan.

in regard to your last question, you have each other to vent to and I would tend to advise telling as few people as possible. Trusted friends are one thing but there is still a stigma attached to Hep C and I wouldn't announce it at work. A great member here, fire chic is a fire fighter and the reaction of her boss was medieval. Maybe others will disagree.

Good luck with the journey ahead. 

Big hugs,

Syd

"Forgive me but I am in the habit of looking for some good in any situation.

JimmyK"

... and we're all the better for it Jimmy K ...

Perspective is an important part of the equation before, during and after Tx ...

I do believe our systems respond very well to "good vibes" and positive thoughts.

This also tends to lead us down the right paths as we move ahead.

Dave